Re: WOW after 35 years, there is a name for what I got !!!

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Posted by Kevin on August 10, 19100 at 23:47:42:

In Reply to: WOW after 35 years, there is a name for what I got !!! posted by Angela on March 08, 19100 at 08:31:50:

: Hello, Angela from Ohio here.

: After 35 years of putting up with my skin disorder, I find that it has a name. WOW !!! I was always told that it was just serve dry skin and it would go away as I get older. WELL NOT !!! It is getting worst each year !! I had just recently changed family docotors and my new doctor has questioned me serveral times about the dryness of my arms, etc... and he finnally suggested a speicalist and to my disbelief the speicalist put a name to my disorder. ICHTHOSIS !!! My sister sent me this web site so I could learn more about it. Wow what a name !!! But best of all, now I know I am not alone. I thought I was the only one in this world to have this. My Mom has always just said that I was her baby who just never stopped peeling.... ha, ha !!! Well, I want it to stop !!

: Did doctors know about Ichthyosis back 25 to 30 years ago??? and was there treatment for it then???

: My new Doctor has me on Lac-Hydrin 12% cream, twice a day and Soriatane 10mg, once a day. The side effects of the Soriatan are scary !!! and WOW on the price !!

: Does anyone knows of any discounts that I can receive for the either of the above. Because I think I will be on these for a while !!! I just can't amagine, 35 years worth of damage to my skin, that I would be healed in just one month.

: Why with the Soriatane does your condition get worsen, before it gets better?????

: I have sooo many questions... Would love to chat with any and all !!

: Sincerely,
: Angela here in Ohio

Well, I am 31 years old. When I was about eight years old, the doctors finally gave a name to this condition. I have Lamellar Ichthyosis. I have three children that do not have it. No one in my family has it.

I have tried the accutane, prescription creams, lotions, etc. LacHydrin, and many others. I have been "free" of all of those chemicals for years now. I only use non-scented Lubriderm once daily and every once in a while, I use Clinique exfolliating soap.

Since there is obviously no cure, you just have to find out what works best for you. Good luck.

I was on Accutane when they were testing it initially. Horrible side effects!!! And due to my condition, I had to be on extremely high doses. My skin looked wonderful, however, my brain began to swell, which affected my vision. Also, I began having muscle spasms and cramps.

Unlike you, I have known for a long time that my disease had a name, but I have only met one other person with the disease. For several different times, I was a test subject at Vanderbilt University Hospital in Nashville, TN (Really old really quick).

I eventually had to come to grips with my condition. Of course, I hope one day that they develop a cure for this condition, but I am tired of being a test track for the newest pill on the market. Lubriderm works very well for me.

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: : Hello, Angela from Ohio here.

: : After 35 years of putting up with my skin disorder, I find that it has a name. WOW !!! I was always told that it was just serve dry skin and it would go away as I get older. WELL NOT !!! It is getting worst each year !! I had just recently changed family docotors and my new doctor has questioned me serveral times about the dryness of my arms, etc... and he finnally suggested a speicalist and to my disbelief the speicalist put a name to my disorder. ICHTHOSIS !!! My sister sent me this web site so I could learn more about it. Wow what a name !!! But best of all, now I know I am not alone. I thought I was the only one in this world to have this. My Mom has always just said that I was her baby who just never stopped peeling.... ha, ha !!! Well, I want it to stop !!

: : Did doctors know about Ichthyosis back 25 to 30 years ago??? and was there treatment for it then???

: : My new Doctor has me on Lac-Hydrin 12% cream, twice a day and Soriatane 10mg, once a day. The side effects of the Soriatan are scary !!! and WOW on the price !!

: : Does anyone knows of any discounts that I can receive for the either of the above. Because I think I will be on these for a while !!! I just can't amagine, 35 years worth of damage to my skin, that I would be healed in just one month.

: : Why with the Soriatane does your condition get worsen, before it gets better?????

: : I have sooo many questions... Would love to chat with any and all !!

: : Sincerely,
: : Angela here in Ohio

:
: Well, I am 31 years old. When I was about eight years old, the doctors finally gave a name to this condition. I have Lamellar Ichthyosis. I have three children that do not have it. No one in my family has it.

: I have tried the accutane, prescription creams, lotions, etc. LacHydrin, and many others. I have been "free" of all of those chemicals for years now. I only use non-scented Lubriderm once daily and every once in a while, I use Clinique exfolliating soap.

: Since there is obviously no cure, you just have to find out what works best for you. Good luck.

: I was on Accutane when they were testing it initially. Horrible side effects!!! And due to my condition, I had to be on extremely high doses. My skin looked wonderful, however, my brain began to swell, which affected my vision. Also, I began having muscle spasms and cramps.

: Unlike you, I have known for a long time that my disease had a name, but I have only met one other person with the disease. For several different times, I was a test subject at Vanderbilt University Hospital in Nashville, TN (Really old really quick).

: I eventually had to come to grips with my condition. Of course, I hope one day that they develop a cure for this condition, but I am tired of being a test track for the newest pill on the market. Lubriderm works very well for me.

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